We are currently in the midst of a genetic revolution in medicine. Advances in science, especially the completion of the human genome sequence, have led to greater understanding of the role of genes in health and disease. Genetic tests for diseases and disease risks are available currently and new medicines and preventive strategies are on the horizon.
Many people first encounter genetic testing when having a baby. Reproductive genetic testing — carrier testing, prenatal genetic testing, preimplantation genetic diagnosis — combines the newest advances in genetics with the most profound human activity of creating life. Reproductive genetic testing provides information: information about the risk of parents passing a genetic mutation to their children; information about the genetic characteristics of embryos produced through in vitro fertilization; information about the genome of a fetus in utero. Th is information can provide reassurance to prospective parents, or the basis for important decisions: to attempt a pregnancy or not; to transfer an embryo to the uterus or not; to continue a pregnancy or not. Th e growing availability and use of reproductive genetic testing presents a host of complicated ethical, legal and social issues.
New genetic technologies will touch the lives of millions of Americans. Yet, there is relatively little oversight of reproductive genetic testing. As the number and type of genetic tests grows and their use becomes more widespread, the time has come to seriously consider whether and how these new technologies will aff ect individuals and shape society, and whether changes in oversight are needed. Some believe that the decision to use reproductive genetic testing should be left up to individual parents in consultation with their doctors. Others believe that reproductive genetic tests should be either controlled stringently or banned entirely.
The Center has undertaken an in-depth effort to assess public attitudes toward genetic technologies — with public opinion surveys, town hall meetings, focus groups, interviews and online group discussions — as a means of making the discussion about genetics and public policy more democratic, less divisive and less the province of special interests.
The goal is not to encourage policy making by public referendum, but to give everyone involved a clearer sense of the diversity of opinion surrounding these issues.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.